Hi all, I’m hoping to find anyone who has experienced anything similar to me, particularly severe digestive slowing/dysmotility without the typical nausea or vomiting associated with gastroparesis.
My problems started around 18 months ago and gradually became quite debilitating.
My digestion seemed to slow down dramatically. I completely lost my appetite and could feel full after only a few mouthfuls. My lower digestive tract would feel very distended and uncomfortable, and I went from previously normal bowel habits to only opening my bowels every 3–5 days.
What has always been unusual is that I never really suffered with nausea and I wasn’t vomiting. Food wasn’t making me feel sick — I simply had almost no hunger and felt as though my digestive system wasn’t moving properly.
Because I could eat so little, I lost around 3 stone (19 kg) over approximately 10 months. The weight loss wasn’t unexplained in the sense that I knew why I was losing weight — I was barely able to eat enough.
At the same time, I became extremely unwell in other ways. I experienced overwhelming fatigue that could leave me feeling almost bed-bound, pins and needles in my face and hands, crawling sensations over my arms, burning/sunburn-like sensations in my thighs, chest tightness, palpitations/racing heart and generally felt very unwell.
B12 then became a major part of the picture. My B12 had historically been low/borderline — around 175–210 on previous testing — and my folate had also been towards the low end. More recent pre-treatment testing showed B12 around 210 and folate around 5–8 on different tests. My intrinsic-factor antibody test was negative.
I’ve also had other relevant blood tests carried out during this period, including investigations for other nutritional deficiencies and potential causes for my symptoms. Nothing else identified so far has provided a clear explanation for the severity of what I experienced.
I started B12 injections in March 2026 and then began self-injecting subcutaneously from early April.
The really interesting part has been what has happened since treatment.
My digestive system has gradually started functioning again. I can now eat proper meals, my appetite and ability to tolerate food have improved enormously, my weight has stabilised, and the severe constipation/very slow bowel movements have gone.
There have been other stages during recovery too. For a period I experienced a strange choking/heavy sensation in my lower throat/chest, lots of dry burping and persistent burning/stinging through my lower throat and chest. I used Gaviscon Advance regularly for months. These symptoms have gradually improved considerably.
I’ve had a gastroscopy, which was reassuring/normal, with no evidence of coeliac disease or obvious stomach abnormalities. Despite everything I experienced, gastroenterology never gave me a diagnosis of gastroparesis or another motility disorder.
For several months more recently my stools had settled around Bristol 4–5 and I was eating normally again. I also tried a ginger/artichoke motility supplement for several weeks.
More recently things have almost gone in the opposite direction. I stopped the motility supplement, but I’ve been having Bristol 6 and occasionally 7 stools, generally once or twice a day. Despite the looser stools, I don’t feel particularly unwell with them. I’m not having nausea or vomiting, and recently I’ve had very little digestive/chest discomfort when eating.
One of the main things that hasn’t resolved is the fatigue. I still experience a persistently high level of fatigue on most days, despite the improvements in many of my other symptoms.
Interestingly, I generally sleep well and most mornings I wake up feeling symptom-free and relatively normal. The fatigue tends to develop as the day progresses rather than me waking up already feeling exhausted. I have had days recently where my energy has been noticeably better, but overall fatigue is still a significant part of my recovery.
It almost feels as though I’ve gone from a digestive system that barely moved to one that is now much more active, although I obviously don’t know whether this represents nerve/motility recovery, something unrelated, or simply my digestive system readjusting after such a long period of illness.
I’m particularly interested in hearing from people who had neurological B12 deficiency or suspected autonomic/vagus-nerve involvement and experienced major digestive changes.
Did anyone experience:
• Severe loss of appetite/early satiety without nausea or vomiting
• Very slow digestion and constipation
• Significant weight loss because you physically couldn’t eat enough
• Neurological symptoms alongside the digestive problems
• Gradual return of appetite and normal eating after B12 treatment
• Constipation eventually changing to much softer or loose stools during recovery
• A period where your digestive system seemed to become much more active as you recovered
• Persistent fatigue even after many of the other symptoms had substantially improved
• Feeling relatively normal on waking, but developing fatigue as the day progressed
I’m not looking to diagnose myself through a forum — I’d just really like to hear from people who have lived through something similar.
It’s been a very long and frightening 18 months, and because my presentation doesn’t fit the classic gastroparesis picture, I’ve found it difficult to find other people’s stories that resemble mine.
I’d be really grateful to hear about your experience and, particularly, what your digestive and energy recovery looked like and how long it took.
Thanks All